Besides Your Disease, Who Are You?

Do you ever feel like your IBD defines you? Let’s face it: It takes up a lot of our days (and nights). Between taking medication, researching what’s new on that front, going to or checking in with doctors, feeling lousy much of the time, trying to get comfortable and everything else, IBD is a full-time job.

As a Crohn’s patient, I admit that I often get stuck in this mire. It all does take time. It is depressing. It makes me forget that I’m so much more than Crohn’s disease.

So I thought I would tell you a little bit about myself, who I am, the other me that is not Crohn’s. First, the most important part of me is that I have a family. My husband and I have been married nearly 27 years, which is hard to wrap my head around. We both grew up and continue to live in New Jersey, where we have spent the last 23 years raising our children.

Our older daughter is 23, a graduate student whose wedding we are currently planning. She’s getting married next year, which may be even weirder for me than having Crohn’s disease! Our younger daughter, 19, is a sophomore in college in another state. Last week, we drove 900 miles round-trip to get her settled in for the year.

We own a rabbit. We didn’t set out to own a rabbit, it just kind of happened. Rabbits are supposed to live about six to eight years on average. Ours is 10. Mostly she sits in or around her cage. She is not too friendly. We’re kind of just waiting for her to decide she’s done.

I wanted to be a writer since I was a little girl. I always read a lot ― my favorite thing to do was read in my room, alone, with the door closed. I literally had a dresser drawer full of books that my grandfather purchased for me. But I always liked to write, too. I liked to make up stories. When I was in third grade, a friend and I co-wrote our first novel. I think I still have it somewhere.

I went to college, met my husband, and got married. I worked in the publishing industry as an editor for years, and then when I was pregnant with my younger daughter, I decided that I couldn’t parent two kids and work in publishing at the same time. I decided to focus on mothering, leaving publishing for some point in the future. I never went back.

I found myself writing on my own, and after many years, published a novel. (I now have published five, with a sixth coming out this winter.) I like to write about families dealing with some kind of disease or medical crisis or condition. I’m sure you’re not surprised. I also like to write essays about my family, and sometimes I get in trouble with them over the topics that I choose to share publicly.

I have friends. I especially love to go to lunch with them. We text all the time. And it’s almost never about how I’m feeling.

I became a great-aunt for the first time this summer, as my niece had her first baby, a boy. I love being with him, and I can’t wait to watch him grow up.

There is still nothing quite so satisfying to me as reading a good novel, though I admit I watch a lot of junk TV ― TLC, mostly.

I am so many more things than Crohn’s disease. I don’t ever want to forget that. But sometimes I do. I don’t want you to forget it, either — about who you really are. So tell me: Who are you? What do you like to do? And make sure you tell me things about yourself that have nothing to do with IBD.

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